New Publication: Making Rare Disease Research Attractive to Companies by IRDiRC Chrysalis Task Force

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Accessible at https://doi.org/10.1177/26330040231188979, the Chrysalis Task Force identified key financial and non-financial factors that make rare disease research and development attractive to companies. More information on the Chrysalis Task Force here: https://irdirc.org/chrysalis-project/ « It was a real pleasure working with such a talented IRDiRC Task Force. We also truly appreciate the critical input provided by the…

Registrations for the 2023-2024 session of the Inter-University Diploma of Myology (DIU de Myologie) are open! 

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Coordinated by Dr Guillaume BASSEZ, Dr Gisèle BONNE and Pr Shahram ATTARIAN, the DIU aims to provide theoretical and practical training in myology, designed to improve the assessment and management of people with neuromuscular pathologies, and to develop clinical and biological research in this field. Please note that teaching is given in French. This session…

IRDiRC Announces Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research – Press Release

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IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). The new RSC “brings broad expertise across different stakeholders and geographies allowing…

Open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership ERA4Health

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The European Commission (EC) is inviting interested stakeholders to participate in the open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership « Fostering an ERA for Health » (ERA4Health) by providing feedback through this online survey. The deadline for providing feedback to the Draft SRIA is October 29th, 2021. The draft SRIA…

EuropaBio Advanced Therapies webinar on EU case for equitable patient access to advanced therapies

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EuropaBio continues its Advanced Therapies webinar series of events, interviews, and publications with a virtual discussion on avenues for enhancing the access of EU patients to novel biotechnology-derived treatments titled “Treatment without borders: the EU case for equitable patient access to advanced therapies.” The webinar will take place on September 7, 2021 from 16.00 – 17.00 CET. The event will address whether EU…